Simon started getting a mustache when he was 12. It was cool, though, because the school district allows mustaches from junior high on. (I’m not sure why.)
Now he’s 15, and he’s starting to get a lot of chin whiskers. It isn’t cool, though, because the school district does not allow beards. (I’m not sure why of this either…)
He seems to be quite fond of his beard, though, because whenever we ask him about shaving it off, no matter how we phrase it, no matter how we introduce the idea, his response is always the same.
Apparently it’s not just his chin hair that’s started the no-ing in his life. It’s also the cafeteria food.
Simon is a grilled cheese connoisseur, and the school cafeteria does not meet his exacting standards when it comes to the proper presentation of grilled cheese.
Top: Unacceptable. Simon will say no and refuse to take it because there is cheese on top of the bread.
Bottom: Acceptable. The cheese is in its proper configuration and does not cross the plane of the bread.
At home – and restaurants – this doesn’t be a problem, mostly likely (we’re guessing) because there’s not a choice involved. At home, he helps make it himself, and at the restaurant, it’s served to him. No choice to reject it and get a different plate from the line.
Hopefully, going with the flow when there aren’t other options a good sign.
Hopefully, that means that if we present him with a razor (without an option), he’ll decide that there’s no choice there, either.
Hopefully, if that doesn’t work, his high school will be understanding.
And hopefully, if they aren’t, it will be easy enough to create our own religion that requires members to grow beards and eat properly made grilled cheese sandwiches.
Simon came home from school happy about school, which is his normal status about school.
School is an amazing place, or at least he thinks that while he’s at home. (While he’s at school, it’s often a different matter and he can get mad at things not happening on schedule or teachers not being there.)
But today, it was happiness.
From the moment he got off the bus, he said school was fun.
I asked what he did at school. “Fun,” he said.
I asked again, emphasis on “what” he did…
“What did you learn about?”
Okay, maybe that’s actually a “where” response, but close enough that I’ll take it.
These feelings about school didn’t fade away. He ran through his usual “script” about going to school and when he goes back to school (tomorrow morning).
But that wasn’t enough today. He kept repeating himself and wanting me to repeat it back to him.
So I came up with a social story on the fly and told it to him.
“In the morning, you wake up, then you get dressed, then you eat breakfast, then you get on the bus, and then you get to school.” I held up a finger for each step, numbering them one through five.
He nodded along, so I went for the repetition.
“What do you do first?” [One finger held up]
“Then what?” [Two fingers held up]
“And then?” [Three fingers held up]
“And next?” [Four fingers held up]
“Take the bus.”
“And what’s the last step?” [All five fingers held up]
“Get to school.”
“Do you feel better now?”
“Great, so can you please get out of the bathroom? Because I kind of need some privacy now.”
On Monday, Simon’s high school had an active shooter drill.
On Tuesday, I got a message that Simon didn’t do well during the drill.
On Wednesday morning, I spoke at length with his school case manager who detailed the problems and changes they’d already started to implement.
On Wednesday afternoon, seventeen students were shot to death at a high school in Florida.
Simon didn’t like the active shooter lockdown drill. He does fine with the tornado drills, but the active shooter one…he couldn’t do it.
He stayed in his seat. He stayed in his seat because it was time for PE, not time to go sit quietly in the corner of a darkened room. He stayed in his seat because he wanted to run around and play basketball in the gym. He stayed in his seat.
He screamed. Loudly. So loudly that one of the vice principals came into the classroom to try to calm him down, but it was too late. He screamed.
He cried. Tears went down his face. He cried.
He stayed in his chair. He could not be quiet.
My mind skipped back to the most depressing show that I had ever seen – the M*A*S*H final episode, “Goodbye, Farewell, and Amen.”
In that finale, Hawkeye has broken down completely and is working with a psychiatrist. He recalls a time on a bus when there were soldiers outside, checking to see if there was anyone on the bus, anyone for them to kill. A woman had a chicken on her lap, and it kept clucking. But then it stopped.
I found the dialogue for the scene:
Hawkeye: “There’s something wrong with it. It stopped making noise. It just–just stopped. Sh–She killed it! She killed it!”
Sidney: “She killed the chicken?”
Hawkeye: “Oh my God! Oh my God! I didn’t mean for her to kill it. I did not! I–I just wanted it to be quiet! It was–It was a baby! She–She smothered her own baby!”
My mind jumps back to thoughts of Simon at high school, Simon not being able to be quiet when someone wants to kill people.
Simon’s high school is working with him for the next time there is an active shooter drill. They are changing the appearance of his schedule to make it easier for him to deal with changes. They are making sure that there is some sort of computer that he can take into a corner with a set of headphones so that he can be distracted and still stay hidden. All of that is awesome.
What if it doesn’t work?
What is he stays in his seat?
What if he screams?
What if it’s not a drill?
My imagination runs wild with thoughts I don’t want to have.
Tomorrow is Monday.
Simon goes back to high school.
In fact, you might say I’m…wait for it….waaaaiiiiitttttt fooooorrrrr iiiiiitttttt…speechless!
Except, of course, I’m clearly not. I’m actually full of speech. Bursting with speech!
I’m referring to the issue with the third and fourth episodes in the second season, the ones that deal with parents showing up and wanting aides for their kids. Looking beyond all the major issues (funding, having aides that are full-time outside school, and all the other nonsense that makes for good TV), this particular issue completely stopped me.
Because, and this is the thing, one-on-one aides should not be the goal of every special needs parent.
First – they teach learned helplessness. Having a full-time aide, when they’re not absolutely necessary, means that the individual will have a harder time learning self-reliance and how to adapt to situations. Think about it this way: if you never had the opportunity or urge to do something because someone else would always do it for you, and possibly quicker or better than you could, would you do it? Maybe eventually, right? And what if they also made it clear to you through their actions (or even their words) that you would not be able to do that? That you cannot do it. That you should rely on them.
My son ran into this issue at school. He had been doing fine getting onto the bus after school by himself. He knew the routine, and he’d run through it without any sort of incident. Then his teacher had to start coming out with a new student. He went from capable to reliant on help in just a few days. Instead of getting on the bus by himself, he waited for her to tell him what to do, and he would want help doing it. She had to fade back out to get him to start getting on the bus again by himself, and once she faded out, he was fine doing it without help.
Second – they teach reliance on and a connection to a single person, who is paid to be near them. At a recent training session I attended, we were asked to look at the people who are around ourselves and our loved ones with disabilities. In many cases, those with disabilities are surrounded not by friends and loved ones, but by those who are paid to be near them – often nurses, therapists, aides, and other types of caregivers. Those very people, though, aren’t going to stick around too often or for too long. They do what they do because it’s a job. Yes, they probably care about the people they care for, but it’s still a job. When the money runs out or when something changes in their life, they will probably go on to pursue other options. They care, but it’s not the same kind of care that you find from someone who chooses to care.
Plus, when the caregiver leaves, they might be taking all that knowledge about the person with them. If the caregiver is a single point of contact, and they leave, then the person with a disability has been abandoned. They have been left alone. The one person who was with them is gone. If they had any sort of emotional attachment, it is severed, and it might have been severed quickly and with no regard to any of those feelings.
Third – they teach other people to stay separate or apart from the person being helped by the aide. Instead of the person being able to directly interact with the people around them, instead of them being able to learn how to communicate with others (and teach others to communicate with them), an artificial wall has been erected. In a school setting, students aren’t as likely to approach another student if they have to go through an adult to get to them. In a real-world setting, if a person will disabilities is kept apart from others through that aide, how will the person ever get to know anyone else? If they aren’t allowed to communicate, how will they make friends? How will they develop their own community?
When my son was younger, we thought having a one-on-one aide was the best solution for him. We’d heard so many good things about it, mostly the types of things that appeared on Speechless when it was time for all the parents to ask for an aide. Aides are the best! Aides will give your child everything they need! Aides are what make education successful!
I’m glad that our ARD committee decided against it. It wouldn’t have been a good thing our son. He wouldn’t have benefitted from him. Sure, maybe it would have made it easier for us and for him in the short run, but now he’s 15, and I’m able to look back and know that it would have been a mistake.
Speechless normally does a good job showing JJ avoiding learned helplessness. He makes friends who can lend a hand, like getting him drunk at a party. He tackles emergencies, like when he went camping with his father and had to make it to a far-away ranger station to rescue his father who is stuck in a bathroom. He attends a summer camp and participates in typical teenager hijinks. He’s an average, everyday teen who just happens to be in a wheelchair and need help communicating. Isn’t that the goal?
The gods of special needs kids and parents are capricious.
Yesterday, everything went as smoothly as anyone could expect for the first week of summer vacation. It got a bit rough at the end of the day, but Simon was tired and hungry, and who among us can cast the first stone for being in a bad mood in that situation?
This morning we went out shopping with a friend, and by the time it hit 11, he was getting upset, stamping his foot, whining, and doing everything else he does when he’s unhappy. Luckily, I got him to tell me that he was angry because he was hungry. Again, hangry is a legit thing for any of us. It totally would’ve broken Job, amiright?
We hit an early lunch at Whatburger. (Whataburger, if you read this, send me free coupons because Simon luuuuvs you!)
Simon showed he was hungry: he ate his food, stole fries from my friend, and drank two jugs of OJ. After that, he was calmer, said he was happy, and said he wasn’t hungry.
Things were okay after that.
We went home and chilled out. He watched TV and played with some of his birthday gifts.
Then it was time to go to HEB. For some reason, the grocery store is one of Simon’s favorite places to go. I don’t know if it’s because of the loaves and fishes. Oh wait, we don’t buy fish. Maybe it’s the cheese and bread to make grilled cheese sandwiches?
I don’t know why it is, but he loves it. He’ll wake me up in the morning by asking when we’re going to HEB. (HEB – if you’re reading this, give me some free coupons, too!)
We drove to HEB – he was happy.
We went into HEB – he was happy.
We shopped through most of the store – he was happy.
We walked into the produce area and ran into…his teacher from this past year.
The happy was gone.
Simon saw her, he touched her arm, she said hi to him.
It was all over.
He immediately began to talk about ESY (Extended School Year – like summer school for kids with disabilities) and school. His entire focus shifted to it. After fighting his obsession all weekend, he gave into it.
I tried to pay for out groceries and get us out of the store as quickly as possible, but he melted down at the register. I used all my tricks for calming him down, and none of them worked.
It was a very, very unsuccessful shopping trip.
So, I pray, dear capricious special needs gods, keep teachers and other school personnel away from us as we shop. (And don’t take it personally, but I think we’ll start driving out of town to a Kroger’s instead.)
At the thrift store, I spotted it.
One of those little statuettes from the 1970s. I remember having them in the house when I was a kid, up on the shelves with knickknacks and tchotchkes.
But this one. This one was for me:
World’s Best Mother.
I brought it up to the register to buy it, and the woman in line behind me saw it. Well, part of it.
“What does that say?” She asked.
“World’s Best Mother.” I picked it up off the counter and showed it to her.
And I bought it.
I don’t know about your house, but in our house, summer is rough. Simon *loves* school.
He loves the people. He loves the routine. He loves the activities.
Starting yesterday (Memorial Day), he began to focus on ESY (Extended School Year for y’all not in the know…it’s like summer school, but for kids with special needs who need extra help over the summer).
He spent the whole Monday talking about ESY, asking about it, telling us when it was.
Unfortunately, ESY is only four weeks long. Two weeks in June. Two weeks in July. Four days each of those weeks. Three hours each of those days.
4 x 4 x 3 = 36 hours.
Over nine weeks.
I’m going into the summer prepared and hopeful.
The World’s Best Mother award is part of those preparations.
Like most mothers – especially those of us mothers with special needs kids – there are more days when we feel like the worst mothers instead of the best mothers.
But we shouldn’t.
Even on those worst mother days, we’re still pretty good. As long as our kids are still alive, we’re still alive, and no one is going to jail, it’s a good day.
We’re the World’s Best Mothers.
School started on Monday!
Simon has been happy to be back on a schedule, and every day, he comes home and tells me that he’s going back to school, and I remind him that he won’t go back until the next morning.
Monday was good.
Tuesday was good.
Wednesday. Well. Wednesday was.
He got home, and everything seemed to be running smoothly, but then for no reason I could tell, something changed, and he began getting upset. He wanted dad home. He wanted dad home now, and nothing I could say would make it better.
Okay, I thought. Let’s try to go for distraction. (Seriously, sometimes I think that distraction is my best friend, although when it comes to ADHD, it’s my worst enemy.)
“Do you want to go run errands?” I asked him.
Oh, yeah, he was all in.
We went to the thrift store across the way.
And he was not all in. Not even close to partway in. He didn’t even have a toe dipped in there.
Instead, as we walked into the store, he began demanding dad. Loudly. Repeatedly.
He got more upset the longer we were there. I tried to get him to hold off, asked him if he still wanted to go anywhere else, told him that dad would be home when we got home. No dice.
He screamed more. He cried, tears streaming down his face.
Time to leave.
We got to the counter.
We had to wait.
Simon really, really, really did not want to wait.
He escalated in decibels, and he added in this little shrieking thing he does.
Now, I’m going to go back a bit.
When we were on vacation, I managed to pick up a cold. It didn’t really hit until the last day, but since it has hit, I’ve been congested and coughing, and I’ve had a sinus headache every day. It normally starts out hurting, and by about lunch time, it has gotten worse, and by dinner time, it’s turned into a migraine. What I’m trying to say is that the noise was bad for the people in the store, but I’m going to say it was slightly worse for me. I couldn’t go to another area of the store and ignore it, and I couldn’t stop it.
I tried to calm him down, like I had been doing. I gave him pressure and hugs, I rubbed his back, and I told him he was doing good at calming down (even though he wasn’t – but for some reason, telling him that he is doing it seems to make him do it sometimes).
He began slamming his hands down on the counter, shrieking.
I pulled his hands back, told him not to do it, and listened to him getting louder.
I considered leaving, but I had two things I really wanted, and I was seconds away from getting rung up.
No one said anything to me, but when I looked around, I saw the stares. Shockingly, people were not enjoying his meltdown. I had to balance what I wanted versus if I thought I was driving other people insane. It was a public place, I reasoned. And if I can’t get him used to going to public places and stopping a meltdown, then what will happen when I *have* to go somewhere and he’s having a meltdown?
I was going to try to wait it out.
I managed to pay with him only breaking free once more from a hug to slam his hands down on the counter. Then we were outta there.
I sent out a quick tweet, which showed up on my FB page, and I got a “sorry” and a frowny face.
I wanted to explain my tweet. And any of my other tweets when I say Simon is having a bad day or a meltdown or whatever else is going on that he (and I) aren’t enjoying.
I don’t mean the tweets to get replies of sympathy. I don’t want people to apologize for Simon – and me – having a bad day.
I’m really just trying to get out there and say, “Hey, this happens. Next time you’re at the store, don’t stare, even if you want to. Next time you’re at the store, realize that you aren’t enjoying the yelling, but neither is the kid – or adult – doing it. Neither is/are the parent/parents who are trying to help the person having the meltdown. Next time you’re at the store, have some empathy, not just sympathy. Next time you’re at the store, be aware why the other person is there, and why you might have to put up with something you find unpleasant. And, next time you’re at the store, if you hear/see this happening, why not run over to the person with a Starbucks gift card…”